Thursday, August 7, 2008

Megamelt while tinkering at the Fleet

We had a pretty good day at the Reuben H Fleet Center. It's San Diego's Museum of Science and Industry. We hadn't been there in a couple of years, so it was fun for a change. We had actually planned to go to the zoo, but my membership had expired and I didn't realize. I didn't want to spring for the $129 renewal at the moment, since we just did Knott's Berry Farm, and it was a really hot day anyway. We decided to go for the bargain-based fun and go to the museum right next to the zoo.

Javi had a pretty big meltdown when we were looking at the last exhibit. This was after three hours of fun at the museum. He didn't have a problem with switching to the science museum at the last minute, which was a relief. It was an aging exhibit that was supposed to age a picture of you to show you what you would look like as you aged, but it wasn't working. It took a considerable amount of time and it failed twice, so Javi just went bizerk. I'm just glad we were getting ready to leave anyway, because I would have had two meltdowns to deal with. I had already prepped Ethan that we were leaving, so it was an easy transition. Of course, everyone was staring as usual when Javi started screaming. I had an elderly lady tell him that he needed to settle down, which of course irritated me and did not help the situation. I didn't feel the need to pull the Autism trump card because I get tired of doing that. I just pulled him aside and tried to work through it, but it wasn't working so we just left. At least he walked back to the car this time. I didn't have to carry him over my shoulder biting, kicking and throwing himself on the ground. We ignored him after the calming techniques didn't work, since attention tends to fuel the meltdown even more. When we got back to the car, which was a long walk, he began the self-mutalating. He picked off a scab which proceeded to bleed everywhere. It's par for the course for one of Javi's megamelts. The meltdowns don't really bother me that much. I know those are more "autistic-like". It's the just plain mean behavior that gets under my skin. This morning he got in trouble for being mean to his brother, got put on a cool down (time out) after screaming at me and then tried to trip me as I came down the stairs. He also lost all privileges on the behavior battery and had to work back from a 0 to a 4 just to get to go today. Yep, that's just a day in the life. Everything is an uphill battle with Javi, and always has been. He makes leaps and strides in some ways, but it's always two steps forward in one area and two steps back in another. It's like playing the stick your finger in the dam game, water always shoots out somewhere else! I keep threatening that Supernanny is going to come and visit us.

Our real life supernanny, our Behavior Mod consultant, should be meeting with us soon. She is our new consultant. I didn't much care for the last one, so I am hoping the new one will be better. This is our second round of bmod. Our first was very intensive bmod, 3 hours, 3 times a week. Honestly, I think we need the intense one again. Right now we are only approved for 1 hour a week.

We are clutching straws, literally, with Javi's sensory needs, which are immense. Javi loves to make "flappy sticks" out of straws and paper. He had vowed he would try to stop flapping when he turned eight, but he's back on the "crack" after only five days without it. We started him on children's yoga on Tuesday and I have been investigating osteotherapy, which I guess is similar to chiropratics? One of the best osteotherapy clinics is right here in SD. I have been checking in to whether or not our insurance will cover it, but I doubt they will. It's a shot in the dark with those neo holistic treatments. They are usually very $$$ and they have no guarantees. It's just so unfair that insurance doesn't cover his needs. The school district, which we live in one of the best in CA for Autism, just can't provide enough service. They give him the minimum and he has improved with many of the services and the classroom time. I know that there is only so much they can do for him. In Javi's case, the OT isn't really working all that well for him anymore. We utilize all the techniques at home, but they only work in short bursts. We have tried the diet in the past, but it wasn't really making enough of a difference to go through all the extra work.

Sometimes I could just scream, thinking of all that happens in this house in a day (and sometimes do). I feel like I put out one fire and another one starts burning. I try to think positively and just take it one day at a time, but man, it's hard. It's a difficult life to have multiple special needs kids. It's so rewarding when things come together, which really makes me appreciate the good times.

I think the most difficult part of being an SN parent is maintaining your sense of self. Reminding yourself, that you weren't put on this planet for the sole purpose of caring for your children. It seems funny to put it that way because that is what we are here for, to prolong our species ;) I think everyone knows what I mean though!!

Ahhh...I feel better. I think I tend to sensor my blogging because we have a lot of family members that read this blog and I don't like them to worry. I really need to just learn to lay my cards on the table. As Mark says, you never know who else you may reach out in the cosmos who will read this and feel like they aren't the only one. So yeah, I'm not super mom, but I do play one on TV.

4 comments:

It's so had when people don't "get" our kids. Connor will have these meltdowns too, for no seemingly good reason. It's hard to explain to people that he just doesn't understand how to temper his emotions.

I'm so with Mark on this one (altho I find myself editing w/fam in mind too)! *smile* But we (other SN mommies) need the freedom to feel overwhelmed & at our wit's end! And by being transparent you give me the freedom to do the same. I also think we need the freedom to take a break...alone...or just some girlfriends on a beach w/a good book. Just for a weekend. *smile*btw...I don't know if I ever mentioned it...I meant to... But one of your posts really stuck with me. The one about having friends you don't have to think about your children with. You're so right...we need to have places to not think about SN stuff. Anyway...

i 2nd EVERYTHING that danielle said! u need to let it out sometimes & take time for urself....sounds like u handled the museum meltdown perfectly! i hope the osteotherapy thing works out - i think i've told u before how much a chiropractor has helped jaden! hang in there girl...i hope u get some time to relax this weekend!

Jen, So true! I have had people yell at me, stare point, make nasty comments, dirty looks, the works! I wish people would just mind their beeswax.

Danielle, Kinda got busted right out of the gate by a family member, so I think I will go back to censoring. I have too many fam members with ailing health to worry them. Think I will have to go back to "vent-o-gram's" either through comments or emails. So, expect one from me again soon *wink*.

Sharon, Thanks, I try ;) Autism is tough. I have a love hate relationship with Autism. Not, that I love it, but sometimes Javi does the cutest things that he would never do with out the Autism. I don't know him to be any other way, so it's difficult to say. It's frustrating and I hate it because some things drive me nuts and sometimes it just seems like Javi isn't comfortable in his own skin. I hate that about his Autism. I just wish things were easier for him and for us.

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Our Family

Ethan, Shanna (Mom), Kaylee, Javi, and Mark (Dad)

About our family

We are a family with three children with special needs. We do things just like any other family, just modified a little. Our life can be crazy at times, sometimes simple tasks are difficult. Love, patience and understanding sees us through each day.

Javi, Age 8, is living with Autism and ADHD

Ethan, Age 3, is living with PDD-NOS

Kaylee, Age 1, is living with Tuberous Sclerosis, IS and Seizures

Click on their site links below to find out more about our children and their stories.